Brief clinical updates

Just to share some clinical updates, since I am sitting here hooked up to chemo for what feels like the 8th hour in a row (it’s actually only the beginning of the 4th hour but geez, they are running s-l-o-w today):

• intrathecal methotrexate has vanquished its target cancer cells for now—I am down to one MTX dose every other week from starting at 2 per week in the beginning of February.

• still getting combo of gemcitabine & carboplatin 2 wks out of 3. This switch from my original chemo, Eribulin, was made last fall. Eribulin sure worked for a long time (19 months?).

• still getting bone-building helper drug Xgeva/denosumab every 28 or so days too, because it might help prevent bone mets.

• I signed up with a palliative care nursing program and now I get seen by a visiting palliative-care nurse weekly at home, plus access to a physical therapist, social worker, and chaplain if I want. All at home which makes a HUGE difference. There are significant parallels between homebirth midwifery–all sorts of authentic midwifery–and hospice nursing care.  Of which this palliative focus is the first stage.

• through the palliative care program, I found a pain-management MD to handle all my pain problems/pain meds centrally.  Too bad she practices in Mass.!

• At her advice, I went off amatryptilline–one pain-relief med–and my increased dizzy spells decreased again, yay (both in frequency and in severity).  So I guess that was the final straw (many of my meds say “May cause dizziness”).

• I switched in May from morphine to methadone for my main pain relief, hoping to get more solid relief with less fogginess.  So far, same level of incomplete relief, less fogginess.  So now we increase the dose to see if I can get better relief.  Areas that hurt: left knee, currently broken left foot, both hands (numb and clumsy and touching most things now hurts (like popcorn and velcro). Back less than before.  Headache much less than at its worst.

• The big thing going on, besides the 3 broken foot bones, is fatigue of both mind and body, and shortness of breath (likely due primarily to lung mets, but we’ll find out more at my next scans).  I don’t go out much.  When I do have a day that includes more than one or two events, I need to rest up afterwards–and beforehand if I’m smart.  I am slowly getting used to this.  It is still sad, though, how everyone around me has redefined a “big day” downward over recent weeks so that a current big day contains the same number of events an easy day used to contain.

What’s been slowing me down

My weak left ankle turned outward on me for real last Friday, after weeks of threatening to do so, causing an impressive tumble to the floor in the bathroom.

Just wrenched and swollen?

By the next day it hurt in a bigger and more focused way, so off we went to the nearest Urgent Care place.

I will spare you all the details but after a visit to the orthopedist on Monday I now have this at the end of my leg for 6 weeks:

don't let the foot move!
don’t let the foot move!

Makes everything harder.  I have to use the purple walker to take the weight off that foot and this coming week will rent a small wheelchair.  Sigh. How this affects our Montreal plans I am not sure yet.  Eric thinks we should just go anyway, June 3 through 6.  I don’t see why we couldn’t postpone the trip for a couple weeks, until I have less pain and hassle.

Life keeps trickling by… and a bit on my midwifery doings

Life keeps trickling by with nothing that calls itself out as news-worthy.  Aka blog-worthy.  The bar is higher now that one-handed hunt-and-peck is my main route of written-word production.  Using dictation software is also an option but it is hedged about with caveats and requirements.  I don’t always feel comfortable spooling along my thoughts for this blog aloud with others nearby.  If I am dictating and people walk in talking, the software picks them up and plops in some garbled version of what they were saying.  And even when it’s just me there are lots of errors to fix.

Yesterday was the International Day of the Midwife so maybe it’s time to share a bit on my midwifery research project that is on hiatus now but may someday be…rehydrated?…and back on the to-do list.

When I was diagnosed with metastatic breast cancer, I was about 2/3 through with a distance program for CNMs and CMs offered by The Midwifery Institute at Philadelphia University. I had been hatching my own research study based on my Philadelphia University research project, but I realized when presenting my work so far at the 2014 MANA  conference that my results really weren’t a strong argument without  better data.  Luckily, as one of the architects of the MANA Stats Project, which provides a way practicing midwives can provide high-quality data on their care, I saw that where my data was lacking was also a general lack in the quality of our data. So we on the MANA Stats team added a few more questions and as of about a year ago, we have been collecting data that will work much better when analyzed for my length-of-pregnancy project.

I am excited about myself or somebody else re-running my study with this better data whenever it has been validated and can be used for research–pretty soon now, I think. That will be a big accomplishment, if I make it that far with enough mental stamina to keep on track doing that kind of analysis and writing. I will have help from my researcher friends who volunteer with me on MANA’s Division of Research.  However, one thing I realized when I presented my work so far at the 2014 MANA conference, to an audience of about 40 very interested midwives:  that was maybe one of the best 90 minutes of my life. So even if I don’t get to continue with this particular project, I feel like for me that was the apex of it and I got to experience it without any compromises. I guess in some ways I am a teacher at heart.

So that’s what’s going on in the currently offline research mind of this “midwife scholar.”  Philadelphia University was sad to lose me as a student but they named a new research award after me to keep my name around.  First recipient? Me!

new research award
new research award

Over in the world of MANA, there is a new poster-presentation contest each year at the conference to encourage entry-level research and project descriptions. I have gotten involved in that, as well, and lo and behold, they went and named the contest after me. A very good way to get me to put energy into it 🙂

One really lucky thing I see having happened in my life is all the work I did to get ready for the CM program and then the courses I took in the program itself. Things like pharmacology, which I did not enjoy and did not really see the point of at some times, have really helped me and served me well as I turn my concentration and what expertise I can muster to metastatic breast cancer.   Having a disease like this means, to me at least, becoming an expert in your own case and care. I do it not because I don’t trust my care providers, but because it helps me feel a little bit like I’m helping drive the bus. Even though this particular bus doesn’t maybe take much direction in the end. So although I had to give up on grad school, it has helped me immensely in the last two years, for which I will always be grateful.

Lemon drop

I feel like I am a lemon drop being sucked on and getting smaller and smaller.

I spend lots more time dozing or just eyes-closed resting than I did a few months ago.  (But maybe that’s the effect of trying out morphine every 4 hours for pain?)  I have less and less energy for physical projects–i get worn out and have to rest or stop.

I am spending more time in bed during the day and less downstairs, where I have to admit it’s much harder to get comfortable.  Only when my picky body is comfortable and I’ve been resting for half an hour or more can I stop trying to ease what hurts and feel like “a normal person.”  Whatever that means.

I have less mental energy or stamina.  I can feel my mind getting tired.  It is hard to engage in conversations on complicated topics.  For a month or two I have been confused about day of the week, day of the month, and even what month it is and which one comes next.

What I’m trying to explore here is what makes for that lemon-drop feeling of there being less and less of Me, the Unique Ellen, in contact with the world.  I wonder if I will just melt away gradually.

lemon drops


I can’t walk well right now because of my numb and untrustworthy left foot and ankle; because I get big dizzy spells when I try to walk after sitting for 45 minutes or more; and because I get out of breath from just the effort of walking.

A few days ago I scolded myself silently, again, for being so darn stubborn, and used a motorized cart at the grocery for the first time. I don’t want to be seen as someone who needs one of these at the store.  But now I am.  It was helpful and I got to do the shopping with my friend Lisa instead of either wearing myself out trying to walk the whole store or waiting in the car.  And on my maiden voyage, aka learn to drive this weird vehicle, I only ran in to one thing.

Giving in to the cart
Giving in to the cart



And, and, and I actually ordered a walker today.  I was convinced to try it once I saw a model with a built-in seat–handy for dizzy spells–and made of purple anodized aluminum.

Mobility being my biggest challenge right now, I guess I will throw tech at it.

My neighbor Bella goes bald!

Wow, my teenage neighbor and fellow QIVC member Bella shaved her head a couple of weeks ago  to raise money for cancer research and remember and honor some people in her life who have had cancer.  I just had to go watch the mass shearing in the high-school gym, where Bella and dozens of other teens bravely said goodbye to their hair when it wasn’t even spring yet!

Thank you, Bella!

End of today


Charging my apple
Charging my apple

Today’s chemo was the start of some cycle or other–9th intrathecal methotrexate maybe, and 6th carboplatin & gemcitabine?  I am not keeping track right now. In fact for the last week or so I have not only been deeply physically tired but also very ungrounded on day of the week, day of the month, the month itself.  My routine at NY Oncology Hematology keeps changing and I am just having trouble keeping up with things.  Like, is it April or is it March still?  Or possibly it’s already June?  Yikes.  Hope the fog passes over soon. And noticing how dependent I have become on the iCal app on my phone.

Cerebrospinal fluid is still coming back clear–no more cancer cells circulating–so that’s continued good news.

Today we were at NYOH from 1:30 to 5:00.  Whew!  Blood draw for lab work, visit with the Nurse Practitioner who works for my oncologist, IT chemo, then regular (through the port) chemo, then finally all done and out the door at 5:00.

I got right in bed because I could feel I needed REST.  Getting better at realizing that, maybe, instead of trying to power through it.